Saturday, May 9, 2015
On an Encounter with the Medical System
My youngest son was hospitalized for 96 days. That hospitalization was under judicial commitment. At the intersection of the legal and medical systems, where my son was trapped, there is a zone of brutal indifference and staggering incompetence, a listless Sargasso sea without currents or outlet. My son is eloquent and an excellent writer and I won’t purport to speak for him with respect to this experience. From my perspective, the ordeal warrants a book of a thousand pages. Since I don’t intend to write that book, it is best to be silent on that subject.
Since I am a lawyer, I set my focus on legal issues relating to my son’s hospitalization. I wrote memos and emails and letters. I corresponded with judges. These activities allowed me to sequester my grief and anxiety and prevent those emotions from seizing, and, then, debilitating me. I consoled myself with the notion that my correspondence was ameliorating my son’s confinement in the hospital. In fact, it was not – everything I did merely added to the Kafkaesque immobility at the place where the tectonic plates of law and medicine collided.
My wife is a psychologist and therapist. She was less successful ousting her sorrow from the center of her imagination. My son’s circumstances filled her with horror, guilt, and unrequited rage.
When my son was released from the hospital, I hoped that my wife, Julie, would feel better, that her anxiety and worry would lessen, and that she would return to something like normal function. But, in fact, the opposite occurred: Julie began to cry uncontrollably and became increasingly reclusive. She complained of intolerable pressure in her chest – as if an elephant were squatting over her ribs – and she said that something "was broken inside" of her. Julie told me that she sometimes felt a burning sensation in her throat. She was insomniac at night, tossing and turning with worry, and, therefore, fatigued during the day. Her work counseling mentally ill people became increasingly intolerable to her. After supper, it became her custom to go upstairs to her bedroom where she would read paperback mystery novels, weep, and pet the dog that obligingly rested in the bed beside her. She refused to leave the house except to go to work.
After a month of this suffering, Julie felt herself enveloped in the aura of a migraine headache. The aura congested her thoughts and occluded her speech while she was counseling a patient. After the session, she hurried home to inject herself with Imitrex. The medicine arrested the headache, inducing a soporific pre-migraine state that lasted for a half day and, then, over night. Julie said that she was exhausted, as if she had run a marathon – she felt limp and weak and her legs were wobbly and she said her thoughts were confused.
Of course, I urged my wife to seek treatment for symptoms that I interpreted as indications of deep and unremitting depression. My wife has taken anti-depressant medication for many years, most recently something called Lexipro. It seemed evident to me that her medication was no longer effective and that she was suffering from a severe mood disorder. Although my wife is a psychologist herself, she harbors significant distrust of the profession – to some degree as a result of her intimate acquaintance with the practice. We agreed that Julie should consult with a psychiatrist and have her medication regiment adjusted.
But we have the misfortune of living within the malign sphere of influence of Mayo Clinic Health Systems. The Mayo Clinic has been allowed to operate as a monopoly over an area comprising half of two states. From Eau Claire, Wisconsin in the east to Fairmont, Minesota, south of Mankato in the west, all licensed medical doctors are employed by the Mayo Clinic and its network of affiliated clinics. The Mayo Clinic has ruthlessly taken advantage of this situation, raising its charges for services while systematically reducing the quality and scope of services provided. In some areas, including Austin where I live, there are almost no doctors. Services are provided through nurse practitioners and physician’s assistants, paraprofessionals on a quota who see patients for five to ten minutes one after another and mostly administer comforting bromides and copious amounts of antibiotics. It is well-nigh impossible to secure an appointment with any kind of specialist. A variety of gatekeepers and minor functionaries zealously protect access to these doctors and it is almost impossible to secure an appointment. Under the Mayo regimen, people with serious medical conditions must go into the emergency room or perish while waiting for scheduling to allow them to see a physician three to six months in the future. When the privilege of an audience with a doctor is finally allowed, you are granted a five minute consultation by a harried physician operating under assembly-line conditions. For this five minute consultation, you will be charged 280 to 500 dollars and told to have tests and, when those tests are accomplished, the results will likely not be reported to you, or, if reported, misrepresented.
Initially, it was thought that Julie might see a psychiatrist practicing where she works in Austin. But this idea was vetoed, possibly due to some obscure internal regulation – the Mayo Clinic’s operations are governed by byzantine policies that materialize and dematerialize at the whim of the administrator involved in decision-making. (Written policies regulate everything but there is no central repository for them and, as is the case with all statutory rules, the policies have spawned vast Talmudic commentaries written and unwritten, authoritative or merely aspirational, mandatory in some cases and precatory in others, a labyrinth that exists to confound and intimidate.) Of course, seeking an appointment with a medical doctor, particularly a psychiatrist, is a daunting process and, in fact, functionally impossible. Unless you aver actual suicidal intent, consultations with psychiatrists are scheduled four to six months in the future. In some instances, even suicidal ideation doesn’t circumvent delays – it depends upon the health care provider and his or her inclination to take seriously statements of this kind. In general, it must be said that most doctors, as a reflex, are skeptical about the existence of mental illness. Physicians, I think, are selected for their wholesome mediocrity and excess is foreign to them – whether it be excess of caloric intake (most physicians are depressingly lean) or excess of passion, the outlook is the same: many people, doctors think, are gluttons and gluttons should be punished whether the gluttony arises in the form of substance abuse, nicotine intake, eating, or indulgence in morbid of emotionality. Of course, every doctor that I know would vigorously contest the aspersions I cast in this paragraph and, further, would wholeheartedly give lip-service to the notion that alcoholism, depression, and other forms of mental illness are, indeed, disease entities, pathologies that are beyond good or evil. But to grasp with clarity, the profession’s real attitude toward mental illness, one must measure what physicians (and their administrative lackeys) do and not what they say. If your blood didn’t properly clot, or if you had a tumor on your liver, or if your leg was broken, would your appointment to see a physician for mere evaluation of the problem, and not even treatment, be deferred for four to six months? To pose the question is to answer it.
So Julie quite properly understood that her depression was thought to be manageable, that she should simply "buck up" and face life’s challenges, that a proper and healthy mental outlook would allow her to pull herself up into the light by her bootstraps, and so her despair only deepened. The most terrible despair is that suffering that accompanies being wholly misunderstood, your misery ignored, or minimized, the sense that no one is willing to help you because no one really believes you need help, a sentiment shared even by the very psychiatrists trained to address these problems as evidenced by their complicity in this system. Julie was told that she could have an appointment with a psychiatrist but that this was a half-year in the future and, therefore, no appointment at all.
Mothers are expected to manage the household. This duty is imposed upon them not least of all by other mothers. But Julie couldn’t manage the house because she could barely get out of bed and because she spent hours each day helplessly sobbing. She could no longer see patients to counsel them and applied for Family Medical Leave, departing the workplace one afternoon in a spasm of convulsive weeping. Because she felt herself a burden on other family members, Julie withdrew to Albert Lea where she stayed with her widowed mother. Each day, we expected her to come home and, each day, she called, a sobbed into the telephone to tell me that she could not come home because her heart was irreparably broken and that it was impossible for her to do anything at all. So a week passed and, then, part of another week.
Julie called me on a Saturday. She was resolved to clean her bedroom. On Monday mornings, a cleaning lady attends upon our house, rearranging the clutter in the living spaces in neat stacks and piles of books, magazines, and other items. The cleaning lady sweeps dog hair into bundles and dusts those surfaces that are not buried in detritus that we have hoarded. Generally, she does not enter the bedrooms, places that are stacked with clothing and books, and, since Julie’s illness, congested with windrows of sodden kleenex, candy wrappers, flamboyant nests of letters, cards, potato chip bags and plastic trays that once held cookies or other edibles – Julie had been eating in bed for several weeks and the scraps of her meals had fallen in the crevasse between tottering bookshelves and the bed, a place where the dog rooted around in the debris. Employing a cleaning lady involves certain responsibilities and one of those duties is to be solicitous of the cleaning ladies own sensibilities and not to expose her to any kind of calamitous mess so awful that it would disgust her – thus, the obligation to clean before the cleaning lady can clean. Julie’s improbable resolution was that she would come from her mother’s house and spend the afternoon cleaning her bedroom so that the cleaning lady could, then, properly attack the dust and other clutter in the room.
Around noon, Julie came home from Albert Lea, a drive of 20 miles, and set to work cleaning her bedroom. She worked furiously, ruthlessly throwing away things and filling several garbage bags with detritus. Piles of books were hauled to the basement or put in sacks to be given to the library for its Spring fundraising sale. The carpet of the floor emerged from beneath the talus fields fallen from the bed and, then, the surfaces of furniture. Outside, a sour-looking rain sputtered and hissed in the gutters. Julie seemed haggard and pale and, when the job was finished, she collapsed, weeping uncontrollably. After unsuccessfully attempting a mid-afternoon nap, she went to her car and drove back to her mother’s house in Albert Lea. On the dining room table, she left a note detailing her instructions to the cleaning lady with respect to the upstairs bedroom.
A few more days passed. The bedroom carpets were vacuumed so that they had the manicured look of a freshly mown lawn. The tops of dressers and bookshelves had been dusted and polished and the room smelled of lemon.
Julie called twice a day and was usually crying when we spoke. She told me that she felt helpless and that nothing could reach the core of her sorrow and that she would be condemned to misery for the rest of her days. A family practice physician in Faribault had told her to systematically reduce her dose of Lexipro and begin taking a new medication. This new medicine was said to be highly efficacious but, also, nausea-inducing – "it is hell on the gut," the doctor told Julie. She was apprehensive about weaning herself from the anti-depressant that she had taken for many years. It seemed to her that the ground under her feet had suddenly evaporated and that she was suspended over an infinitely dark abyss without anything to protect her from falling.
On the upcoming Saturday, Julie planned to meet her daughter in a Twin Cities’ suburb so that they could shop together for a wedding dress. (Julie’s daughter, Sena, will be married in September). This task weighed upon Julie’s mind and caused her all sorts of anxiety. First, she was unfamiliar with the roads and traffic in the suburb where she planned to meet Sena and fearful that she would get lost or delayed. Second, acquisition of a wedding dress is a transaction fraught with emotional peril of all kinds. No wedding dress can possibly be resplendent enough for the occasion which it celebrates and, even a beautiful woman like Sena, believes that there are certain defects in her form and figure that the dress should disguise, a concern that might well induce mother-daughter conflict since Julie, of course, believes Sena to be flawless in all respects. In any event, Julie was brooding about this imminent expedition, imagining hardships and calamities, and fearing that what should be a happy occasion might somehow be ruined by her mood disorder. Every time that I spoke with her, she fretted about the wedding dress. I told her that the wedding months in the future and that the excursion to buy the wedding dress could be deferred. But buying a wedding dress for an accomplished and much-beloved daughter, of course, is securing that daughter’s future happiness and this is every mother’s obligation and, without the purchase of an appropriately splendid wedding dress, of course, Julie would not have done everything possible to guarantee that her daughter’s wedding was special, indeed, even, perfect and, therefore, the guarantee of a perfect marriage and a happy future. In some sense, the whole of Sena’s life was at stake – at least, Julie seemed to harbor this belief although she is perfectly rational in most respects. But weddings implicate irrationality in every culture and every person and so there was nothing she could do to think herself out of this dilemma whichshe had set herself: what was most important for her to accomplish at this moment in her life was also the most difficult and consequential task that she could possibly have been assigned.
On Tuesday, April 14, Julie called me at noon. She was crying and said that she had been prostrate with misery all morning long. She told me that her mother was holding her but that nothing helped. I told Julie that she could not possibly go shopping for the wedding dress on the weekend. "It will have to be postponed," I said. "But it can’t be...it can’t be," she said.
Julie handed the phone to her mother. Julie’s mother is 82. She said that she was baffled by Julie’s sadness. "It doesn’t get any better," she told me. I said that I would drive over to Albert Lea at 3:30 to pick Julie up and take her home. I wondered if, perhaps, I should simply drive her to the emergency room in Rochester.
Julie took the phone back. She said that she couldn’t be hospitalized because she had to help Sena select a wedding dress. She told me that Sena was coming over to visit her around 2:00 pm. "You must explain to Sena that you can’t go this weekend to buy that dress," I told Julie. She continued to cry and her words were wet and shattered: she told me that she had awoken with a feeling of terror in her belly and that there was something badly wrong with her. I said that I would drive over to Albert Lea to pick her up mid-afternoon. "I can drive home," Julie said. "I don’t want you to drive," Julie’s mother said, words that I heard in the background. "I will pick you up and we can get your car later," I said.
At 3:30, I left my office and was walking down the corridor in my law firm when a secretary called out to me: "Sena is on the phone and says it’s an emergency."
I went back into my office. It was a bright day and the sun was filling the concrete-walled window well above my desk and computer. Sometimes, if you are lucky, small and delicate birds will perch on the rim of the window-well, silhouetted against the radiant sky that I can see from my basement office. The iron-grey trunk of a tree extends upward, column furrowed as if with worry, and overhead branches, skeletal and leafless dangle down and, beyond, the heavens are striated with three cables crossing my field of vision from right to left, spaced at intervals that suggest the tones of a chord sounded in equal temperament.
I put the phone to my ear. Sena said that Julie had collapsed in her mother’s kitchen. She had fallen forward against a counter and was unresponsive, seemingly in some kind of coma. Sena and her grandmother shouted at Julie and stroked her face and, she opened her eyes, gasped and turned her head to the side to vomit bright red blood all over the kitchen tiles. An ambulance had been called. Sena said that Julie had been taken to the ambulance and that she was about to follow her to the emergency room at the Mayo Clinic hospital at Albert Lea. I said that I had been on my way out the door and that I would come immediately to meet Sena and her grandmother at the hospital.
The Spring was wet and mostly ten degrees colder than normal and the days had been grey and suffused with icy rain. But, on this day, the sky was clear and the sun was cheerfully shining over a landscape still ravaged by winter – scuffed muddy fields and twigs blown by blizzards from the trees scattered everywhere in the grime that is the distillate of drifted snow after the snowbanks have melted.
I drove west to Albert Lea, speeding a bit. I wonder what degree of excess speed might be allowed under these circumstances: officer, my wife is very possibly dying and so can I drive 80 miles an hour, or, even, 85 to reach her bedside. The freeway was bare as a dance floor from which all the people have departed and the distant steel silos caught the sunshine and reflected it in spears and lances of light. A few days before, a corpse had been found just north of the freeway where it passes Albert Lea. The corpse was a skeleton, disjointed bones flat against the winter-killed grass in a matted tangle of rotting fabric. On the corpse’s finger, there was a big ostentatious ring bearing a big and pompous red stone. The ring was heavy and, in the pictures in the newspaper, looked vaguely medieval, a fretwork setting that seemed to be bronze or copper-colored gold. The report said that the ring was possibly a clue to the identity of the dead person: Did anyone recognize that ring?
I looked north of the freeway to where I thought the body had been found. Anonymous fence lines crisscrossed the meadows and the prop of a small ornamental-looking wind turbine spun overhead. In such situations, your mind is cold, remote, rambling through various outcomes without fixing on any one scenario as more probable than another – after all, the future is inherently unknowable...I had not expected Julie to collapse vomiting blood when I woke up in the morning. All sorts of possibilities occurred to me – some benign, some horrific, but I felt no emotion. A great silence and calm spread across the landscape and the horizons were blue and the clouds impossibly remote. Sounds reached me as if from a great distance. I have a terrible phobia about blood and I wondered if I would faint while driving and crash my car at high speed into one of those ditches irrevocably deep and filled with the debris of winter. Maybe Julie would be sitting up in the emergency room and smiling with shy embarrassment at me when I came to the hospital – "So sorry," she might say, "to cause you all this worry." Or, perhaps, she would be as dead as the skeleton found in its rotting clothes under the fence-line built to keep deer and domestic animals from running across the freeway.
I put the car in a lot to the west of the emergency room of the old hospital in Albert Lea, a grim-looking brick building occupying the ridge overlooking Fountain Lake. Sena met me at the emergency room door and we went into a small, close and brightly lit room, a tight space about the size of walk-in closet. The emergency room seemed chaotic to me with cops strutting around and enormous elderly men wheeled in various directions on great industrial-looking carts.
Sena said that she had followed the ambulance toward the hospital and that it was proceeding in a most leisurely manner at first but that, then, suddenly, the vehicle had flashed its red lights and engaged the howl of its siren, lunging forward in violation of all of the rules of the road, surging across intersections against red lights and driving at high speeds.
We sat for awhile. Julie’s mother came. She sat with us in the small room. Outside, we heard old men groaning and someone who had gone mad speaking in a language none of us could recognize.
Several times, I ventured into the corridor of the emergency room. Julie was at the end of the hall in a bay that was closed with a hanging fabric that looked like a broad shower curtain. The curtain was attached to a groove in the ceiling by metal hooks. It was impossible to see beyond the curtain. The bright cubicles on both sides of the corridor swarmed with activity. Big machines like sentinels loomed over altar-like beds were people were squirming or writhing or lying immobile as statues.
Each time, I went into the emergency room corridor I was rebuffed. I went back to small room to make my report. Time dilated around us. Finally, a nurse said that we could see Julie. We went to the end of hall where the shower curtain was slid aside theatrically, as if making special presentation of the victim to us. Julie was lying on her back with her eyes closed. Her face was drawn and looked like a pale, indifferent mask. At first, I thought that she was sleeping. "Are you awake?" I asked. She said that she could hear me. "I am keeping my eyes closed because of the light," Julie said. I looked over my shoulder and saw that the lens of a big compound light, multi-faceted like a dragonfly’s eyes, was staring down at her, irradiating her face and shoulders. She was in a hospital gown with a blanket thrown irregularly over her mid-section.
A little doctor appeared. The doctor was wearing pale blue scrubs, a light garment that looked like a pajama on him. When I looked down, I expected his feet to be bare. The doctor told us that Julie had experienced an internal bleed and that the source of the hemorrhage was uncertain. The little doctor was mildly reassuring. "She doesn’t need a transfusion at this point," he told us. Two intravenous ports had been carved into each of Julie’s arms and saline solution was infusing to rehydrate her. A nurse came and injected an anti-acid into the stent in one of the IV lines. Julie said that she couldn’t believe that this had happened to her. She took my hand and said that there was no need for me to linger around the emergency room and that I should hurry home to walk the dog and, then, go to my book club. On that Tuesday night, we were planning to discuss that last section of Walter Miller’s Canticle for Leibowitz.
A fat matronly nurse appeared and had Julie sign a number of documents. The documents were clipped to a clip-board. Of course, there was no way that Julie could read those documents and the nurse presented them to her as a matter of fact, proffering a pen before she could even decipher the titles on the pages that she was presented. It is characteristic of modern medicine that its practitioners believe in informed consent, not as a principle of communication with patients, but, rather, as a defensive bulwark against malpractice suits. The ritualized presentation of consent documents to be signed, even by patients who are essentially comatose (or, at best, severely disinclined at that instant to parse a complex legal document), has a theatrical aspect. In this setting "consent" is signified by a gesture without any meaning of actual consent at all. It is like the lines of people numbly passing through security at an airport – of course, TSA is without any real ability to stop terrorists and, indeed, the accumulation of a big passive crowd in an area of the airport where there has been no security screening at all, merely presents a more efficient killing ground to potential terrorists if they were to attack the airport in its unguarded annex and not the planes at its protected core. The various documents presented for execution in an emergency room are talismans – they don’t have anything to do with the well-being of the patient and, instead, are intended for the protection of the doctors and the institutions which the doctors serve. But, of course, the sheer contempt that the medical system has for legal doctrine is embodied in the manner in which these quasi-contractual releases and authorizations and consent forms are treated. To doctors, law makes no sense and is a absurd and arbitrary system – therefore, anything of legal import is treated as an arbitrary form, something without substance; asking a patient suffering pain and in fear of her life to execute a legal document is the very essence of coercive duress, the epitome of a bizarre elevation of form over substance that characterizes medicine’s contempt for the legal system.
Julie signed the sheaf of releases. I discretely looked away – it was an indecency.
Now that Julie was stable and no longer in danger of bleeding to death, this question presented itself: What should be done with her? Clearly, she required hospitalization. A dire emergency had just passed and, perhaps, without medical intervention she would have perished. But now what?
The little doctor told us that there were no beds in Albert Lea. Julie said that she was not willing to be hospitalized in Austin. The Mayo Clinic facility in our community has a sinister reputation for negligence and haphazard incompetence – and, in any event, the place has almost no doctors. "We will need to transport you to St. Mary’s hospital in Rochester," the little doctor said.
I stepped into the corridor and, then, went outside to contact Angelica, my daughter. I needed to call her to provide updated information. The afternoon was unchanged, bright and sunny with the bare trees opening their arms to the warm sky. Everything shimmered and glittered and the lake was brilliantly blue.
More ambulances arrived at the ER portico, a robust cavalcade of misery. Sirens sounded in low places in town, among the disorderly lawns and the neglected backyards and alley ways and the dogs began to howl mournfully. In the hospital, nurses were ministering to groaning people in beds shoved against the walls of the corridor. Every treatment bay was occupied. Bodies huge and swollen with agony were everywhere gurgling and hissing. Wheeled carts laden with casualties zoomed over the tiles. The entire population of Albert Lea, it seemed, had succumbed to desperate illness. People were having panic attacks in the lobby. Officious cops were everywhere moving among the hurt and sick. Radios stuttered out commands and the automatic doors at the entry to the hospital opened and closed like hands haplessly trying to clap but somehow missing one another. More people were admitted and the place was chaotic with nurses and technicians running in all different directions.
A nurse came into Julie’s bay and asked her if she could stand. "My legs feel wobbly," Julie said. Careful to not dislodge Julie’s intravenous fetters, the nurse urged her to the edge of the bed and, then, had her stand up. The back of Julie’s hospital gown was open and I felt sorry for her – it is humiliating to have your buttocks exposed to the insect eye of the overhead examination light, but she didn’t seem to notice. The nurse brushed at the garment to slide it over her nakedness. We all looked up to the monitor on the stanchion beside the bed. Numbers that I interpreted to be Julie’s blood pressure readings precipitously declined. Would something arrest the descent of those numbers flashing in green digits on the monitor? Down and down the numbers went until Julie’s blood was no longer pumping, until she was dead, until she was not only dead but long dead and buried. I expected her to fall over. There was a sharp intake of breath, a hiss of air withheld. "How do you feel?" the nurse said. "Faint, a little faint," Julie said. But she didn’t wobble and didn’t collapse and, although her blood pressure was now in the negative numbers, reading at the square root of a negative one, nothing really happened and, so, perhaps, after all, we had misunderstood the meaning of the display on the console.
"There is no ambulance crew that can take you to Rochester," the little doctor told Julie. "Every crew is engaged right now, picking up patients." He shrugged. "We will have to use the air ambulance," he said. "The air ambulance?" Julie asked. "Helicopter," I said. "The helicopter," the small doctor said. "I don’t want to ride in a helicopter," Julie said. "I’m afraid of them." The doctor said: "We will give you Ativan, through the IV."
The doctor told us that the helicopter would have to come from Mankato. It was not an emergency and so the helicopter dallied in its flight across the rolling prairie. Perhaps, it hovered over the wooded gorges and fern-filled dells of the Blue Earth River, then, toured the great swamp at the headwaters of that stream, the shallow, cold lakes full of migrating birds, big pelicans and geese flying north to enjoy summer on the banks of Hudson Bay. The helicopter explored the lacy clouds drifting overhead and paused to inspect the filigree of a con-trail and, then, leisurely descended on Albert Lea, coming to earth like a fat, tethered balloon. "They are ten minutes away," the nurse told Julie. This was after we had waited for an hour and a half. But this ten minutes, of course, was really another half-hour, and, then, someone announced that the helicopter had landed and I carried Julie’s purse and another bag to the car. Julie’s mother wanted to follow the ambulance to the landing pad so that she could watch the helicopter ascend into the sky, climbing the bright ladder of the day with the precious cargo of her daughter – I suppose she thought that Julie had attained a kind of celebrity and glamor, that she was now the sort of dignitary that is ferried through the sky in her own private helicopter. I went to the home of Julie’s mother, picked up her things, put them in the car and drove back to Austin.
Once, I took the deposition of a man who was badly burnt in an electrical accident. The man was flown by helicopter from Austin to the burn unit at Regions Hospital in St. Paul. I asked the man what he recalled about the helicopter ride. He told me that he didn’t remember anything except that there was a vibration and the helicopter was open to the sun so that it was very bright. He said that he felt the rays of the sun as very close to him, pressing against his raw burned face and that this was painful. Beyond that, he had no recollection.
In Austin, I picked up Angelica and we drove east on the freeway to Rochester. On the Dexter ridge, the great wind farm stretched from horizon to horizon. The turbines were turning and, in the sunset, the shadows of their rotors swept across the yellow and brown fields like vast black scythes. I wondered what the innumerable wind turbines looked like from overhead, from a helicopter scuttling through the sky above those vast spinning blades.
Rochester is in a hollow place between wooded hills where there is a river regulated to run in a concrete gutter. The center of the town is a plateau of low skyscrapers with marble escarpments, the main campus of the Mayo Clinic. Ten blocks from the downtown, the old buildings of St. Mary’s Hospital stretch along a hillside where the decaying mansions of once-famous doctors ride the crest of the ridge overlooking the facility. The hospital was built before there were cars and so, I suppose, the surgeons and other consulting specialists lived on the slopes of the hill nearby so that they could walk to work. Everything is tightly configured, the buildings squeezed together to fit the long narrow site and, since there was no place for a parking ramp, cars have to be tucked underground in big dank galleries beneath the hospital. All of the parking spaces close to the elevators that open into the hospital are reserved for "consultants" – the term the Mayo Clinic uses for its doctors – and, so, if you arrive during the day, there will be no place convenient to park. After six o-clock, the reserved spaces are released to the general public and, since it was now about 7 pm, I was able to find a spot near the elevator. A consultant of Turkish or Armenian origin was trudging to his car, a duffle bag in hand and his lanyard identification still swinging from his neck. He looked bemused and resigned. A boy in a wheelchair was playing with automatic doors near the elevators, causing them to flap open and shut as if agitated.
Julie was on the 6th floor in Intensive Care. We met Julie’s sister in the elevator and she turned around to lead us through the corridors to the entrance to the ICU, a long corridor like a hallway in an orbiting space station, pale tile and pastel walls equipped with glistening rubber-like bumpers to keep the wheeled gurneys from gouging them. Walking down that hallway, you have a sense of dread and the pit of your stomach feels as if you are weightless, as if the corridor is spinning through a black and empty outer space.
Everyone whispers in the ICU and there is a rustling sound of ventilators and the nurse’s stations, to continue the space station metaphor, look like mission control at NASA. In glass cubicles, motionless forms seem embedded in white crates pierced from all sides by tubes and data collection sensors. A red balloon-like head, features swollen beyond recognition, rests in a bower of white bedding. Urine pools in exposed plastic bladders under the beds. In a place like this, I suppose, it’s best not to look too closely and, if you look, not to see.
Julie’s room was dark. Some monitors blinked and, sometimes, a battery chirped. A beautiful Indian woman with a very faint accent was standing over Julie’s bed speaking in a low voice. The Indian woman was also wearing pajama-like scrubs. Another woman, black with an elaborately spiky hairdo, was entering data into a computer located a few feet away. Outside it was now dark. It didn’t matter because there was nothing to see anyway – the window opened into a concrete and brick airshaft.
The Indian woman introduced herself and extended her cool, tiny hand for me to shake. She also introduced her colleague, the African doctor with the braided pinnacles of hair extending in all directions around her face. The African doctor didn’t seem to understand English. Both of the women had names that sounded outlandish to me.
The Indian doctor’s voice was soothing, like the ripple of water through a cool stream bed. She said something about "bleeding from the mouth and bottom." Her message was clear: all would be well. I wasn’t sure to whom she was speaking. Julie said that she was horribly exhausted and that she just wanted to be left alone to sleep and it wasn’t clear to me that she was listening to the beautiful Indian consultant. The consultant looked at Julie while she spoke but, perhaps, she intended that I listen and note her words. The African doctor’s fingers clicked on the keyboard and the digital screens glowed with gem-like emerald colors. It was apparent to me that no one had any idea why Julie had suffered the hemorrhage. It was also clear to me that, as far as the doctors were concerned, what was past had been survived and what is survived is only faintly relevant for future treatment and so they expressed a casual indifference to what had transpired – all of this had happened before Julie entered their care, had been the outcome, no doubt, of incompetence in other lesser doctors not working at the Mayo Clinic’s headquarters in the marble towers and glass skyscrapers at Rochester, no earlier opinions mattered in these hushed halls – now, it seemed, help had come and the patient had been retrieved from not only the travail and peril of her illness but also from the threat of malpractice committed by other less effective physicians. This was the domain of silence and the beautiful Indian doctor had come to command and direct; she was not here to listen and react, rather, her role was to create the reality in which the patient would reside until healed. I said something about Julie’s unremitting depression and expressed my hope that she could be treated for this condition while hospitalized. The Indian doctor tilted her head as if I were speaking a completely unintelligible language, words that were not in her vocabulary or, indeed, partially comprised of obscenities.
The two physicians finished their work and, bowing slightly, glided away from the cubicle crammed with machines and monitors, two IVs infusing simultaneously so that Julie was pinioned by both arms. "You know why you are in here," I said. "Because I almost bled to death," Julie said. "No," I said, "You came by helicopter and so that has to be justified by keeping you in ICU." "But I almost bled to death," Julie said. "That too," I said.
Angelica and I retraced our way to the lobby with its green, veined marble floors and flat, glistening pillars. Two women shrouded in black burkhas were sitting on a bench by the door, princesses, I supposed, of some Yemenese royal family. With dark slender fingers, they were tapping text messages into their phones. The black covering them was a featureless and incommunicative as the darkness at the bottom of a well.
"Interesting," my daughter Angelica said.
"Disgusting," I replied.
"You don’t’ need to be racist," she replied.
"I’m not racist," I said. "Someone should take their fucking phones away from them and, then, smash them in the face with those things. It’s disgusting. It’s disgusting and hostile."
"I don’t know why you would say that," Angelica said to me as we rode the elevator down to the gloomy underground parking.
"What’s the point of getting stuck in the 9th century?" I said. "If you want to get stuck, get stuck in the nineteen-fifties or something like that. You’re interested in them and tolerant, of course. But do you know what they think about you?"
"I don’t know," she said.
I told her. But, of course, who knows what such people think about anything. Probably, they never noticed me nor did they see Angelica and, if I had passed through their field of vision, circumscribed as it was by that black cloth, I doubt that they would have given me even a passing glance – women dressed in that fashion are remarkable and intimidating, but, contrary to what I had told Angelica, I assumed that we were, to all intents and purposes, invisible to them.
Across the street from the big hospital, small cafes looked toward the building, a great, foreboding ark marooned on the side of the hill. The cafes looked old, bedraggled, exhausted with sadness. In them, people sat next to cups of coffee and plates of stale pastry and the dread in those places was so dense you could cut it with a knife.
Back on the prairie, the tips of the wind turbine towers twinkled with red lights, constellations of them in the darkness like buoys tossing on a turbulent sea.
The next morning, I saw Julie in the ICU. Nurses were cheerfully washing exposed parts of her body. I went outside and walked to the outer corridor, away from the atrocity exhibition of the other ICU rooms, each of them displaying some unique, and possibly, irrevocable calamity. The hallway was irradiated with sunshine, bright, with wholly forgettable pictures lining the walls. From the elevators, one of the hallways led to a pediatric wing. At that hallway, there was a color print of a jolly pirate ship crammed with black-bearded villains, many of them clenching sabers in their jaws. It is the only picture that I saw in the Mayo Clinic that was the least bit interesting and, apparently, intended to amuse desperately ill children. But the corridor, and the elevators running up and down in their pneumatic tubes, was completely empty – I never saw a child anywhere near this place.
When I returned to the ICU, nurses were attempting to position Julie in an uncomfortable-looking chair. This was an intricate task involving much repositioning of IV stanchions and the various tubes and monitors attached to her body. One of the IV incisions was leaking bright red blood onto Julie’s hand. I felt momentarily faint and stood by the window looking into the brick and concrete air shaft where several tiny sparrows were playing.
Julie told me to go to the pharmacy at the Mayo Clinic in Austin and pick up some medication for her. It seemed that she would be released the next day and that these medicines would be necessary for her continued treatment. One of the drugs was Effexor, a new and different anti-depressant. The other was some kind of medication intended to control the production of acid in Julie’s stomach.
In Austin, I went to the pharmacy, identified myself, and, then, was ushered into a small room where there was a steel desk and another entry into the area behind the counter. An earnest-looking pharmacist appeared and explained to me in detail the malign effects of the drugs that Julie was about to take. It was like watching a commercial on TV for some new medication except that the pharmacist’s list of lethal or horrific side-effects was not accompanied by shots of well-tanned men and women strolling idyllic forests or combing picturesque beaches in the tropics where their handsome dogs frolicked in the surf. In those advertisements, the neatly coiffed and well-maintained patients, people suffering from bowel disorders or crippling depression, always have the glittering and artificial look of an expensive golf-course. In this small room, the only place to look was at the pharmacist in his white coat and he looked back at me as he recited all the ills, it seemed, that flesh is heir to.
At the end of his litany, the pharmacist asked me what had happened to Julie. I gave him a brief account. He told me that people who have taken Lexipro for many years are prone to bleeding and that the medication can be erosive to the gut. This was the first, and, indeed, only explanation that was made for Julie’s internal hemorrhage, a casual, even off-hand comment, by a pharmacist. No doctor explained why Julie had bled or what triggered the episode or how the damage caused to Julie’s stomach and esophagus occurred or what that damage meant nor did anyone provide any useful prognosis, any guess as to the future, or any other information at all. The interaction, if any, between Julie’s depression and her emergent symptoms of a massive internal bleed was never explored nor, even, mentioned. But, of course, this is a consequence of the medicine’s generalized contempt for those suffering mental illness and, indeed, the profession’s skepticism, shared, it seems, by some psychiatrists, that there even is such a thing as depression and that if such an ailment exists, then, the person so afflicted needs to "buck up" and exercise proper mental hygiene, perhaps, the psychic equivalent of regularly brushing and flossing your teeth. In any event, a fog of unknowing wrapped itself tightly around the event of Julie’s nearly fatal hemorrhage. In medicine, it seems that causes and effects are always profoundly occult.
When I came to the hospital after work that night, Julie had been moved to a new room, one of the general wards in a much older building. This part of the hospital maintained the sepulchral character of a Victorian institution managed by sinister nuns. There is an empty, echoing chapel hidden in one corner of the building and a statue of St. Francis beset by pigeons, both real and bronze, standing in a wholly enclosed courtyard among tombstone-shaped air-conditioning and ventilation equipment. The floors are polychrome marble and the elevators enclosed in dark oak panels crafted like expensive bookshelves in an English manor house. Crucifixes adorn the walls and, as you enter the place, the visitor runs a gauntlet of tinted portraits of deceased nuns, women with iron faces and set jaws wearing steely glasses over their small and cruel eyes.
Julie had to share a room with another patient, an elderly ex-nurse with a UTI (Urinary Tract Infection). The woman was Catholic and hard-of-hearing and she spent the entire day, Julie reported, assigning her hapless husband tasks and managing her eight or nine grown children, tirelessly transmitting demands to them on her cell-phone. Like all old women, she enjoyed Fox News and watched that station continuously, the sound turned up to accommodate her inefficient ears. Julie looked exhausted. (In a hospital, the staff labors around the clock to pester and persecute the patient – the intent is to murder the afflicted person with sleeplessness.) She told me that she had endured a painful endoscopic procedure. "What did they find?" I asked. It was just as expected – an ulcer that might have bled, although it was not bleeding currently, and some erosion to her esophagus. "Why did it bleed?" "They don’t know," Julie said.
The hospital room was gloomy with an old, discolored tile floor and wooden walls spiked with another crucifix. The fixtures seemed like something out of a novel by Charles Dickens. Everything about the room seemed dirty, although I’m sure it was impeccably clean – the ambience of general and ancient filth had something to do with the dim light, the chattering TV set, the window onto a grey and desolate courtyard, the hallways with their wooden door thresholds opening onto tableaux of only modest misery (this being a general ward and not the ER or Intensive Care Unit.) It seemed to be a place where people might howl and howl and be ignored, where bedpans would be ignored, where wheels would inevitably squeak as people were transported by gurney to oppressive and painful medical procedures.
"I can’t wait to get out of here," Julie said. She sat in her bed in a pool of light. The IV that had earlier leaked was still producing a pudding of blood on Julie’s arm. Beyond the curtain, the unseen ex-nurse spoke loudly on the phone, compensating for her poor hearing. She said that her priest had visited her and that she had said some prayers with the pastor and that he had administered the sacraments to her, even, all the while gossiping about events in the parish. Julie said: "I hear everything she says. I wish I had my own room. She runs the TV all night long. She asked the nurse if she had to shut off the TV at a certain time and the nurse said – no, no, it’s a semi-private room. I just wish I had my own room."
Beyond the curtain, the unseen old woman with the UTI blathered on about her priest. I said to Angelica: "Should we help your mother get a private room?"
"How?" Angelica asked.
I said loudly: "I have brought the Devil Worshipers hymn book and breviary. I think we should say some prayers to Lord Satan."
"All Hail Lord Satan!" Angelica said loudly.
"All Hail Lord Satan!" I said. "We implore you to heal our Sister in Satan."
Angelica said: "Go in peace. Serve the Goat-Boy!"
The old lady was still talking on the phone and said that her priest had brought her a prayer-book. Of course, she had heard nothing.
Several times before Julie was released, I told the doctors who periodically visited her – always someone different with a bemused, baffled look on their face – that Julie’s most pressing problem was her depression and that I thought it imperative that a consultation be scheduled as part of her discharge plan. The doctors to whom I told this nodded in agreement. But treatment at the Mayo Clinic is administered through a "team of physicians," a model for the delivery of health care that is touted as efficient and beneficial – the more eyes observing and minds diagnosing, the better the care, at least, this is the theory. In practice, of course, "team" delivery of medical services is a calamity. First, by definition, most doctors are prima donnas, and, therefore, congenitally incapable of acting cooperatively with others. Particularly at the World Famous Mayo Clinic, the physicians are all Olympians, god-like personages superior to ordinary mortals and, therefore, each superior to every other doctor. Accordingly, if a team were to be comprised of such individuals it would be highly fractious. But there is no worry on this point. No team even exists. Mayo doctors are fabulously busy and so they don’t have time to confer with one another. Thus, there is no continuity of care, no follow-through even with respect to the most fundamental medical tasks. The patient is entrusted to the care of a group of individuals who seem entirely ignorant of anything that has occurred before their entry into the sickroom and that are, also, blissfully uninterested in anything that the future holds. Because no one doctor is ultimately responsible for any patient’s care, no one is accountable. Of course, this is comforting to Mayo doctors – it is a pleasant thing to practice medicine, earn high salaries, participate in cutting edge research, and not, ultimately, be responsible for the care of any individual patient. And, in any event, in the Babel of foreign tongues spoken by Mayo Clinic consultants, it is unlikely that anything could be successfully communicated even if an effort were made – something that doesn’t seem to happen much anyhow. (The construction of a tower to probe the entrails of heaven is a relatively simple task compared to the care of a gravely ill human being.) Each time, Julie was seen by a new doctor, and they were legion, the physician seemed puzzled, even surprised – what was going on here? "It is depression’s work," I said. "She must have a out-patient consultation scheduled." But the doctors to whom this was said seemed obscurely confounded: mental illness is a matter of the mind, indeed, it is all in the mind, and so why would a consultation be necessary with respect to an imaginary ailment.
After two nights in the hospital, Julie told me that she was going to be released at 3:00 pm on Thursday and that I should come to bring her home. I knew that she was very anxious to escape the hospital, and, so, I made haste to reach Rochester and be in her room ten minutes before the time of her proposed discharge.
When I came to the hospital, Julie was sitting in a shabby chair beside the hospital bed. She was no longer connected to the IV equipment but had fistulae cut into her veins on both arms. The problem with blood leaking from one of those venipunctures that I had seen the previous day, and that had made me somewhat queasy, had not been corrrected. Her arm was all stained with half-congealed blood. An officious nurse was beyond the curtain wall separating Julie’s bed from that of the overbearing retired nurse. The woman and the nurse were arguing with one another. "She’s being discharged also," Julie said.
It took a long time for the old lady with the UTI to be retrieved from the room. One of her sons stood in the hallway carrying an old piece of blue luggage, the sort of trunk you might see in a movie filmed in the late thirties. The old woman and the nurse continued to bicker. At last, a porter appeared with a wheelchair to cart the retired nurse down to the car-port so that she could go home. The porters at the Mayo Clinic all seem to be middle-aged recovering alcoholics, cashiered real estate agents or used car salesmen. These wheelchair jockeys are all men, all of them sleazy with slicked back hair and little pencil-thin moustaches, scrawny, affable, dishonest-looking fellows whom you expect to speak with a slight Southern accent. These porters don’t exactly look like Elvis Presley, though they sound like him when they greet you and roll you through the corridors; rather, they look like Vernon Presley, Elvis’ convict, truck-driver daddy. Of course, the old lady had probably been an admirer of Elvis Presley and, so, she was very pleased to see a porter vaguely looking like the King of Rock and Roll (or one of his disreputable kin) appear in the hospital room. He squired her away down the hallway whistling a cheery tune and, then, the nurse turned her attention to Julie, using a sharp, tiny scissors to clip off the identification bracelet on her wrist, and, then, stooping to detach the IV ports still embedded in Julie’s arms. I went to the window and looked down to see the courtyard and the statue of St. Francis with the bronze birds on his shoulders.
The nurse handed Julie a sheet of paper containing discharge instructions. "Is there an appointment for her to see someone about her depression?" I asked. Julie scanned the sheet of paper anxiously. "No," the nurse said. "There is supposed to be," I said. The nurse was puzzled. Why would someone need to see a doctor for depression? Isn’t that some kind of mental problem? The nurse said: "Well, it usually takes four to six months to see a psychiatrist." Julie said that it was okay and that she simply wanted to go home.
"You can get the car and bring it to the entry," the nurse said. "Julie will be ready to go in a couple minutes."
I went into the parking lot and pulled the car out of the darkness and into the bright sunlight. Arab princelings were ushering their harems into limousines. A couple of Elvis impersonator porters were fingering the cigarettes in their breast pockets well aware that if they smoked anywhere on the Mayo Clinic campus they would be summarily fired. A man with a broken leg sunned himself like a turtle on a rock in the bright light outside the door.
It took forty minutes for Julie to be delivered to where I was waiting. She called me twice, whispering into her cell-phone: "I can’t believe how long this is taking." And, then, "they called again for someone to bring a wheelchair."
But, at last, she appeared. The crisis was over. She was going home.
At home, Julie slept for a couple days. The stay in the hospital had exhausted her.
Some days, she cried and cried and cried. Other days, she was cheerful.
She took her medication and, gradually, her mood improved to some extent, although it is still very fragile. To date, there has been no reoccurrence of her internal bleeding.
Why did this happen? As far as I can determine, no one knows.
Is there a moral to any of this, anything to be learned? If there is a lesson in this story, I don’t know what it is.
Human life is very uncertain. Something unknown, inexplicable and deadly awaits us all. Perhaps, the aspect of fate that is most disheartening is that it is inexplicable – when doom comes for you, no one will be able to explain it.
Today is a bright day with clouds crisply sculpted by the cool breeze. The trees are clad in their bright early-Spring leaves. Tomorrow will be the same.
Or it will be different.
May 9, 2015